Oxygen weaning for someone with ALS

LizT · 02-11-2012, 01:08 AM

Does anyone know if its possible to wean someone off of oxygen after theyve been on it for years?
When my PALS got his trach and later went on his vent, his pulmo automatically put him on oxygen (dumb). I know of other folks who have been on a vent for alot longer than him that dont use oxygen at all.
He says he can tell right away if his oxygen isnt on... even though his stats dont drop. There was one time he was off of it for 6 hours and his stats were still in the safe zone, though he felt very uncomfortable.
The reason Im wondering is because life would be quite a bit easier (travel and power outages) if we didnt have to deal with the O2 as well.
Thanks guys.

susanf · 02-11-2012, 07:12 AM

Hi Liz, I don't know if this hold true for adults. Nina was on a vent for a month when she was born. It took about 8 or 9 days to wean her off O2. It was done very, very gradually. The sats were the main thing they watched.

whistler · 02-16-2012, 12:40 AM

There are special clinics that specialize in ventilator weaning. I know there have been people weaning up to a year after but anything is possible from your description just make sure you have a clinic that specializes in this.

LizT · 02-16-2012, 09:03 PM

whistler- is there a difference between ventilator weaning and oxygen weaning? He still needs the vent. cant breathe without it.
Thanks for the input Susan. Sure do wish there was more info on this. Im nervous about bringing it up to his pulmo because he is the one who put him on it in the first place. He clearly didnt and doesnt understand ALS... I dont know.

catcaniac · 02-17-2012, 11:14 PM

My husband also has been on a vent and can't breathe without it. When he is without oxygen, he does great most of the time and his stats don't drop. But we know that any time he doesn't have it for hours, what ends up happening is that he begins to drop stats rapidly all of the sudden. This has only happened a few times when say, the tubing is knocked off and the nurses don't notice or the oxygen concentrator is functioning poorly and it isn't caught right away. I really think that although he can go awhile that consistently his body does not regulate the oxygen and send it through his body so after awhile, it begins to just disappear. I can't really imagine we would ever be able to wean him off even though it is a pain to go places with the tanks and all.

whistler · 02-18-2012, 10:18 AM

Quote:

Originally Posted by LizT

whistler- is there a difference between ventilator weaning and oxygen weaning? He still needs the vent. cant breathe without it.
Thanks for the input Susan. Sure do wish there was more info on this. Im nervous about bringing it up to his pulmo because he is the one who put him on it in the first place. He clearly didnt and doesnt understand ALS... I dont know.

I apologize for my late reply but I am new to the site and think I have not been pressing the right buttons sometimes. I would say that there is a difference in my unprofessional opinion between oxygen weaning and weaning from a ventilator. However I think that in someways the process of weaning off would be similar. Weaning from a ventilator I am guessing would be harder than if someone had an oxygen mask. In my situation my brother-in-law is on a ventilator but through that process I have learned that hard to wean patients need to seek advice from somewhere that specializes in these cases and takes a more all encompasing approach to getting then off. I am currently in British Columbia where there are special units set up within particular hospital for the purpose of weaning. The longer someone is on assisted breathing I do believe the more difficult it is to come off, but not impossible! There are also interesting medical devises still in testing stages (eg. Lungpacer) small electrodes placed under the skin help with the breathing process. I wish you the best and if there is anything else please let me know! Whistler

Miss · 02-18-2012, 11:15 AM

Liz, I found that when I had a question that was contradicting the doctor's procedures, I did better when I had documentation. I would pull articles from the Internet supporting my question, print them out and take them with me. Armed with that and the fact that you are a nurse, you should have no problems from the Pulmonologist.